By Richard Vogel
Bleeding Disorders Association of Northeastern New York (BDANENY) is dedicated to assisting families with bleeding disorders through education and advocacy designed to enhance their quality of life.
In the late 1960s, a family in upstate New York had a son diagnosed with hemophilia. As they searched diligently for resources, they became aware of a national organization to support those with bleeding disorders. The family along with a few close friends began raising funds to help other families and individuals with hemophilia in the local community, and in 1968, the all-volunteer organization was established as the Upper Hudson Valley Chapter—NHF, Inc.
The 1970s were good years. The miracle drug of the day—concentrated factor VIII—saved many families by allowing them to self-infuse clotting factor at home. Bleeds could be treated quickly and reduced the hours spent at a hospital and for many, nearly eliminated the extreme hardship of having to travel great distances to receive transfusions of plasma or whole blood.
Fast-forward to the 1980s, the chapter continued to operate as an all-volunteer organization. Operating from Troy, New York, they became affiliated with the Hemophilia Treatment Center of Albany Medical Center and expanded to cover the same counties the HTC served. The chapter still covers this area, which includes twenty-two counties extending from Ulster and Dutchess counties, east to the Green Mountain—almost to New York City, west to Oneida County, and north to the American/Canadian border.
Identifying a need for support, advocacy, and community outreach programs, leadership and their dedicated group of volunteers worked tirelessly to meet the needs of all bleeding disorders patients within the community. Especially during the dark years of HIV, the chapter was there to support and console community members as much as possible.
Striving to encompass all aspects of the bleeding disorders community, in 1999, the chapter updated its name to the Bleeding Disorders Association of Northeastern New York, Inc., also known as BDANENY.
Fifty years from their inception, they have blossomed from an all-volunteer organization working out of their homes to an office with one full-time and one part-time staff and a variety of monthly events hosted. The volunteer base is comprised of dedicated community members including patients, families of patients, and health care professionals.
BDANENY was the first in the nation to host a carrier retreat bringing women together for a weekend of events tailored to meet their specific needs. Other programs initiated such as the Clinic Travel Assistance Program (CTAP) have been adopted by other chapters nationwide.
The chapter continues striving to meet the diverse needs of a geographically dispersed community through a variety of programs, including legislative advocacy, fundraising, scholarships, camper-ships so affected children can attend bleeding disorders camps, recreational community activities allowing members to gain support and friendship from one another, and an emergency assistance program designed to provide a rapid, non-invasive source of financial relief for emergencies or urgent needs of the members. The programs are focused on improving the quality of life for persons afflicted with genetic bleeding disorders and their associated complications.
BDANENY encourages and helps guide its members to advocate for their own health care. From its inception, the chapter has served on national committees to help guide the future of the bleeding disorders community and address the needs of the individuals and families served. They provide support from advocacy to education and offer an opportunity for community members to voice their concerns from the New York State capital to our nation’s capital in Washington DC.
Working with the support of their Board of Directors and extensive volunteer team, the staff at BDANENY consists of a few key people. With her extensive experience and knowledge of accounting software, Patricia “Trish” Bengraff has been with BDANENY since 2017 and serves as Operations Manager. Her organizational office and project management skills have proved a valuable asset to the organization.
Also with BDANENY since 2017, Melissa Deeb is a part-time Program Director. Melissa attends SUNY Albany full-time as she earns a bachelor’s degree in Communications.
With a strong background in non-profits, Beth Mahar became our chapter’s Executive Director in 2020. Beth came to us from the Hospice & Palliative Care Association of New York State as Director of Operations and prior to that was Director of Communications for the New York State Association of Area Agencies on Aging.
Small but committed, the staff helps BDANENY continue to make a difference in the community and the lives of the families that rely on it for resources, education, support, and friendship.
Beth Majar shares, “We are proud of our history, where we began, and where we are today. Our motto is very dear to us and sums up our service to our community, “We are here for you.”
For more information on BDANENY, visit their website, www.BDANENY.org.
To contact, call or email: 518-729-3577, memberservices@BDANENY.org
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